Amanda was up earlier than me, getting ready for the clinic appointment. When I walked into the bathroom and saw her, I could easily tell she was retaining more fluid. Six pounds from the previous morning, she said. A total of 13 pounds up since discharge. I already had a reminder set to call the pharmacy the minute they opened. While I took Tank for his morning poo walk, I called them. When I got through all the push-one-for-English and other junk and actually got to talk to someone, they told me it was set to pick up. I’d told her about the issue, and she asked if I wanted it delivered. Poor girl, I unloaded on her then, telling her I couldn’t trust the delivery guy to get it to us, so there was no way I wanted it delivered!
We made our way to the hospital, I parked in the garage adjacent to the hospital. The valet is always slow to get your keys and slow to go get your car, so I opted for the garage instead. This wasn’t my normal garage; it’s a little father, and with the wheelchair, I thought it better to park closer. The garage was packed, with no handicap spots, we had to go all the way to the roof. Then, the elevator was down on the opposite side of the sky bridge, so we had to brave the street. I should have parked valeted. Parking is just ridiculous around the med center. Yesterday, even with a max charge of $10 a day, it still cost me $17 to park since I left and came back.
The wait at the clinic can be excruciating sometimes; today was shaping up to be one of those days. While we waited, I walked to StarBs to get a shared coffee for us. The clinic is on the Texas Heart Institute side, which is where the CTICU is, so it’s on the complete opposite side of the block from Starbucks. It’s at least a 10-minute round trip to walk it. We were thinking Amanda would at least be back for labs by the time I returned. It was about an hour after our arrival before they even took her back for labs and almost two hours after our appointment time before we even got to a room. As we waited in the lobby, our old heart failure nurse came to talk to us. She said she saw Amanda’s name on the list and had to come out to see her. We loved her and wish she was our coordinator. She mentioned she was finishing up her PA degree but didn’t know where she’d land. I sure wish she would land on the transplant team. I told Amanda that she’d probably end up at Methodist, at ton from this transplant team have ended up there.
We are used to Dr. Nair’s entourage, preceding him at clinic visits. The NP, then the PA, and then the coordinator, followed by Dr. Nair. Today, it was just him and the coordinator together. He jumped right into things. We both had a barrage of questions for him and even notes on our phones! We told him about the weight gain, but admitting Amanda would be a last resort. He asked the coordinator if they had given her any IV Bumex today. I told Amanda to call this morning so we could be ahead of the game, but she wanted to hold off; I knew he’d want to give her an IV dose or two. Amanda voiced concern about the amount of fluid she received yesterday with the Daratumumab. He said he’d check with the pharmacist about a more concentrated dose and see the possibility of double or triple concentrating it.
He asked about Methodist and if we’d heard from them. Amanda said we were waiting and mentioned Vanderbilt had called, too. He said he had them on hold with the transfer and needed to reach back out. I jumped right in then and mentioned my plan to go there and get approval, then wait for the listing with Methodist and keep the Vanderbilt approval in our back pocket if we felt we weren’t getting anywhere here in Houston. I asked if Amanda, clinically, could wait a few months to be listed here, though. He thought she could wait and liked the idea of being dual-approved.
He also wanted to swap one of her rejection meds back to what she’d been on before all this mess. The one they changed was specific in helping with the rejection but inhibited wound healing, which would be bad for the future transplant and could cause fluid retention, so he wanted to discontinue it. I also asked about pain management since we couldn’t get an appointment anytime soon. He said he’d take care of the pain scrips until we got an appointment. We will be seeing him weekly for the foreseeable future anyway.
He was very concerned-looking today; he kept looking at me, maybe my face was a little more worried than usual. He is always good about checking if we have any more questions, typically looking at me to see what else I’ll come up with. He was intent on answering all our questions today; he may have felt bad that he never came by when we asked for him. He genuinely feels bad about our situation and apologizes almost every time we see him. He also lets us know he has his own feelings about her being listed there but says he can’t go against the board. He seems a little perturbed about their decision. I know, tell me about it, bud!
Amanda also asked if we could go home for a few days; he obliged and said he thought it would be ok. I had hoped he’d say no. I don’t feel going home is a good idea, but Amanda really wants to go. We both have a ton of things to do and get from the house, but I have an uneasy feeling about all the fluid right now. I don’t want to be the bad guy, put my foot down, and not go. I was hoping Dr. Nair would play bad cop; maybe I should have texted him ahead of time and told him to take one for the team! I told Amanda that if she had gained any more weight, we wouldn’t go anywhere, though. She begrudgingly agreed to that protocol.
We both checked our notes and tied up a few more questions, and then he was on his way. The coordinator stayed and introduced herself since we’d never actually met her before, and Dr. Nair left no time for introductions, jumping into things with us right away. It was a lot for all of us to remember, including the Doctor; he was leaving saying the three things he needed to do for us. She did a debrief going over everything that we spoke of, which was a lot. Amanda and I both liked her; we haven’t had a good luck with coordinators, but I’m hoping this one sticks around and is good. They ordered an IV dose of Bumex before we left and scheduled us for in the morning to get a dose, too.
We all, the coordinator included, said that it would take a while to get the Bumex from the pharmacy. It was 2 p.m., and we were hungry, so I ran to Salata to grab lunch we could eat in the waiting room. When I was walking back, Amanda called to say she was already done, surprising both of us! We just ate our salads in the car in the parking garage since we were headed to get the Furoscix from the pharmacy.
As I got out to walk into the pharmacy, I told Amadna to pray that I didn’t kill anyone; I was locked and loaded for an argument! I told them what had happened, and the tech said he was about to ask what the issue was since they got the meds back. I went through everything, and he assured me he would talk with the diver about the issue. We were all complaining about the pharmacy with the coordinator at the clinic visit, explaining how much the meds were and how we didn’t want them left at our doorstep. She was appalled at the price of each infuser.
We went from one pharmacy to another, HEB, this time to get the new script. They didn’t have it but assured me it would arrive tomorrow morning. From there to Walgreens to pick up the remaining of the large discharge order. I won’t even go into detail because I’ll just mad type forever about it. Let’s just say I left the drive-thru loudly saying cancel all that is left, and we’ll just transfer everything elsewhere! They’ve had the order since Thursday and still couldn’t get the meds or other issues ironed out. I’d forgotten why we swapped to HEB years ago, but this was a nice refresher on why!
I finally met our next-door neighbor when we were back to the apartment. She likes to smoke and talk on the phone under the stairs just outside her door. Always on the phone, I’ve never wanted to bother her, but she was just smoking today. I started to walk over with Tank ahead of me to shake her hand. I said: “he’s gentle,” not to alarm her. She said, “I already met this sweet guy!” Sybil had introduced him on a walk one day. She was nice, and it was good to finally meet her. Tank wasn’t a fan of her thin cigar smoking; he let a gigantic sneeze out as we walked away!
We had an easy evening. I needed to wash some clothes and cook dinner, but there wasn’t any put-together Chinese furniture for me to assemble, at least. We only need a few more decorations from home to finish things up. Amanda wants to get a few things for the shelves in her closet to get things more organized. We’ll really have it together after we bring a haul up from our storage back home, too.